Alex's Adventures

Alex and Maddy

Sunday, February 22, 2015

Yesterday was such an emotional day for this Mommy! Almost 6 years ago we decided to enroll Alex in Cub Scouts so he would have an activity he could do with friends since we knew sports weren't going to be a good option for our boy. We had no idea what it would come to mean to Alex and to Bruce and I.

Over the last five years, we have watched Alex and his den work hard to meet requirements and achieve goals, but more importantly, we have watched them forge friendships that have changed Alex's life.

This sweet group of boys have grown up together.

Cub Scouts is all about teaching character. About being good citizens, helping others. These boys have exemplified that in everything they do. I have seen each one of them help Alex in countless ways. They have hung back with him when he physically couldn't keep up, they have stuck up for him when being made fun of, they have helped him set up tents, they have grabbed me or Bruce when he needed us medically, they have helped him complete projects. Simply put they have loved him. So it was with pride, but also sadness that we watched these boys leave cub scouts and move on to boy scouts last night. It was the last time that Den 2, our flaming Arrows will be together as a group. And so in typical spirit they blessed my boy one last time. Two years ago when they became Webelos and chose a patrol name of Flaming Arrows, they made a flag. Last night they voted for Alex to keep that flag as the scout who showed the most Scout Spirit. A simple gift with so much meaning. For Alex he felt pride. For me, I felt love, love that has enveloped my sweet boy, by these incredible kids and their remarkable parents.

And so with tears in my eyes, I watched as my baby grew up, as he crossed a 15 foot rope bridge to become a Boy Scout.

I am so excited to see what this new chapter holds and so happy five of these boys have chosen to cross together to the same Troop.

Let's see, what else...
Alex continues to be more stable than he has ever been. He looks good, he feels good. We had one little hiccup where he got a mild case of pancreatitis and rhinovirus which landed him in the hospital for 4 days, but he recovered well.

Maddy is a mess! But boy is she a cute mess! She is such a doll who continues to make us smile. When Maddy is happy she is infectious, but look out when she is mad. She will let you know it! That spunk and determination is serving her well as she continues to struggle to meet gross motor milestones. It is her sheer will that allows her to do anything because nothing comes easy for the poor girl. She is in physical therapy 3 times a week. We are making progress, but it is SLOW. Her brain doesn't seem able to get her legs to do what they are supposed to. The question is why? We are trying to figure that out. She will have a Spine MRI on March 30th to rule out a tethered spinal cord. If that is the case we will do surgery to untether the cord and she should make progress pretty quickly once she has recovered. If it is not a tethered cord we will need to do some more testing looking at nerve problems. In the meantime, we are working on getting her some orthotics (SMO's) to help her feet and ankles. Her little ankles are so weak and loose. She cannot keep her feet flat on the floor when standing. Her feet roll. We are hoping that orthotics will at least help that issue as we work on the rest of our "standing issues". I have had a lot of people ask, so I will address this here... We have been told by multiple medical professionals that there is nothing we could have done any differently to change or prevent this. This is not a case of Maddy being spoiled or held too much. It is in inborn reflex to put your feet down and bear weight when you are held under your arm pits. Maddy WILL NOT let her feet touch the ground in this position. We are working as hard as we can to "teach" her something that should be natural. Every physical milestone has been like this. Trying to teach what she should just "get". The other big issue we are working on is her GI/weight issues. She has had multiple tests and we know at this point that she does not absorb carbohydrates correctly. She will have an endoscopy and biopsies done on March 4th to determine which enzymes she is missing. Once we figure that out we will have to make significant diet changes and eliminate whatever is causing the problem. Despite all the medical challenges, our little princess continues to charm everyone she meets. She is so very smart and we love watching her learn more every day.

As if life wasn't crazy enough, I am dancing two nights a week. I have loved refinding my passion for dance. it is so good for me to get out and have some time for me each week. As much as I love the dancing, the fellowship is so great. I feel renewed when I leave each week. I am so grateful for the break! I have also taken a part time job! One of my dance partners and good friends is opening a business called Taste Buds Kitchen. I am her "sales manager". For any of our local friends you need to check it out! www.tastebudskitchen.com/southlake

To say we are busy is an understatement! Between Taekwondo, scouts, school, homeschool co-op, doctors appts, therapy, Kindermusik and my work it is pretty crazy! However, we love that everyone is well enough for us to enjoy time with friends doing activities we love.

Thank you for those that continue to support, love and pray for us.
Ali

Wednesday, January 7, 2015

This is an update I prayed I would never have to write. We met with Dr. Koenig yesterday morning to go over the results of the brain MRI. The MRI was normal, however at this point Maddy meets criteria for a "definite Mitochondrial Disease". I have considered the possibility as Maddy has had some health concerns, but I thought there would be more testing. I did not realize she already met the diagnostic criteria. I am sad, but ok. Our children have totally different presentations and we will treat them as individuals. I know we will (and are) intervening much quicker with Maddy so hopefully she will not have to face all the struggles Alex has.

We spent the rest of the appt discussing the neurologic concerns with Maddy's development. Her brain is fine. There is a discrepancy between the development of her upper and lower extremities. Dr. Koenig said there are some definite problems from a neurologists perspective. The way Mad holds hers legs, their movement, the reflexes, etc are not normal. The next step is to do a spine MRI. If that does not give any answers we will have to look at nerve function. In the meantime, we are to continue PT.

I have not received any results on the bone marrow biopsy yet, but Dr. Koenig feels like the hematology issues are definitely related to the bigger picture.

On the bright side, Maddy did really well with the procedure and is happy to be home. She is a little sore, but playing and smiling. Alex was so good during the trip which was so helpful for me.

Please pray for my precious children and their health. Please pray for peace and for my mama's hurt that is hurting at what my babies have to endure.

Sunday, December 21, 2014

It has been a really fun and crazy few weeks. Mimi flew in on December 12th for 5 days. It was a short trip, but we had so much fun! Mimi got to spend so much time with the kids just loving on them. She got to really enjoy Maddy and see her spunky little personality. It was so nice for me to have a second pair of hands with my "Mama's girl" for a few days. For 10 years I have loved watching the incredible relationship grow between Alex and my Mom. They have such a special, close relationship. Bug will always be, Mimi's boy. It was so neat for me to watch the love and closeness grow between Mimi and Maddy this trip. We cannot wait till March!

The day after Mom left, Dad flew in! We are busy getting last minute things done for Christmas and cooking some of our favorite home cooked meals.

On to Maddy... On December 4th, during Alex's GI apt, Dr. O and I got talking about Maddy's size. he was concerned by the amount of food she was eating and still not gaining weight. He gave me some samples of a formula meant for kids with trouble absorbing and asked me to schedule her for an appt. Surprisingly, she started drinking the formula right away with no problems. We were able to get an appt 1 week later. So on the 11th, we had her first "real" apt with our GI. He was not happy with how far down the growth chart she has fallen and that she is not gaining despite adequate calories. he was really happy she was drinking the formula. He is concerned that she has malabsorption. He had us do some tests to figure out if that is what is going on. He also mentioned if the tests confirm his suspicion he will want us to rule out a disorder that has malabsorption and neutropenia as its defining symptoms.

However, incredibly once we started the formula Maddy made HUGE strides in Physical Therapy. Like leaps and bounds. Total 180! If you look back at my last update she really had not accomplished any skills. Two weeks after starting formula, she is now rolling back to front and front to back. She is CRAWLING!!!! She went from not even being able to maintain on her hands and knees to crawling!!!! She is still not weight bearing, but we are so hopeful that the extra nutrition will continue to help her improve.

The day Mimi was flying in, Maddy woke up with a fever. Per our protocol, I called hematology. we had to head into the ER. We were so impressed with the way Cook's cared for Maddy and so thankful for the well organized protocols hem/onc has in place. We never even stepped foot in the waiting room (they had us enter a back entrance). They started an iv, drew labs, gave fluids and a dose of IV antibiotics and we were home 5 hours later (in time to pick up Mimi)! We followed up with hematology this week. They are both happy and unhappy with how she is doing. overall, she is doing great. However, they would have liked her counts to come up higher with a fever. Her neutrophils went from 20 to 800 which is a huge improvement, but they expect/hope for them to at least come over 1000 (1500 and higher is normal). Unfortunately, her counts were back to 30 on Thursday. In light of this response and some other inconsistencies with her original diagnosis, they are trying to get a bone marrow biopsy added on to her MRI in January. This is not a small feat considering her hematologist is in Fort Worth and the MRI is taking place in Houston! Luckily, we have some good contacts/doctors in Houston who are trying to pull it together.

I think that is all for now. We are hoping for a calm, peaceful end to our year!
Ali

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About Me

I am the mother of the most amazing boy. Alex is smart, funny, caring and loving. He also has a mitochondrial disease. Alex is the sun that lights my days and my heart. He is the absolute joy of my life. Although this path is not one I imagined when I found out I was pregnant 5 years ago, I would not change one minute with my precious buggy. Thank you for sharing in our lives.